Mia had her tonsils out last winter. Super easy, puked a couple times coming out of anesthesia, ate a McDonald’s smoothie and a breakfast sandwich after, laid in bed for maybe a day. Didn’t need pain meds hardly at all and never got the stinky breath because she just kept going and eating and being a boss as usual. Here we are a year and a half later, Haven had the same procedure, plus her ears redone for the fourth time, and it’s like a whole different procedure. It’s definitely not brain surgery, but it feels like brain surgery all over again. What is generally an outpatient procedure has turned into a 4+ day stay.

It’s been three days since Haven has ate, drank, or talked. She is going through a regression as we call it in the special needs world. She’s now gone 48 hours without pain meds. She’s very lethargic and clearly miserable. We cut her IV fluids yesterday morning in hopes it would make her hungry or thirsty but she ended up with a terrible headache and more pain, and the beginning signs of dehydration forcing us to hook her back up. She shows little to no signs of beginning to eat or drink or take meds. She is scared. She is sad. She is in pain. And I’m right there with her. There is nothing worse than this part of my mom job. I hate trying to force Haven to do things against her will. I hate feeling like we are violating her basic rights as a human. I hate always having to be the bad guy. I hate that I can’t just reason with her and talk her into eating, drinking, and taking meds like I would her sister. I hate that SO many of us have tried everything and we are getting nowhere. One of our nurses left the last few days apologizing because she feels like she is no help. Even though she totally is. She makes sure I have water and snacks, she tells me good job, and she scolded the PA that came in like a bat out of hell and upset my already very fragile girl and her momma. She may not be able to get Havey where we want her as quick as we want her, but she’s definitely been so much help. They all have, you can tell from their eyes and hearts that they want so badly to help my sweet, but very stubborn baby.

High functioning Autism is such a complex but strange thing. It has ways of making you forget it even exists, just for it to come back roaring louder than ever, wielding you 10 feet back from where you were. We spent weeks preparing Havey for this, reading her social stories, talking to her about it, trying to keep her informed and aware so that the shock would be minimal. But no matter how many times I go through things like this with Haven nothing fully prepares her or myself for that matter. Haven isn’t Mia, or any other child. Something so routine for most has once again been traumatizing for us both and so SO hard. And there’s not a single thing I can do about it. It is the most helpless, shitty feeling as a mother. I love this child so immensely. I have fought for her relentlessly. I rally and raise awareness for her every chance I get. This is why. Haven is beautiful, and intelligent, and loving, and vibrant. But even being all those things Haven still has Autism, she’s still recovering from PTSD, she still struggles with many things most people and parents take for granted. I lay in this hospital bed holding her, wishing we could go home, it’s almost Mother’s Day. I want to be home with both my girls, a decent meal, and a glass of Chardonnay. Instead I keep reminding myself to show grace and patience and give it to God. Willing myself to think of how scary this is for Havey, how painful this is for Havey, how hard it must be to be so scared and to feel no control of your body or surroundings. To have all these nurses and doctors constantly messing with her. She’s always been her own person on her own schedule and I have to remind myself that that’s okay. Life can wait, it will wait, right now she needs this slow down. So we shall wait until I can safely and confidently take my sweet girl home.

Next time you see me post or hear me talk about Autism Awareness, the struggles, the joys, the pain and hard times that come with parenting a special needs child, or next time you see me so overwhelmed and outspoken with anger or emotion because of the people and circumstances we deal with in this life try to put yourself in our shoes. Consider what your life would be like if you did this day in and day out. Maybe you’d be more apt to showing a bit of compassion, understanding, or empathy. This job is really really hard sometimes, grossly underpaid, extremely overworked and very very emotional and exhausting. I’m doing the absolute best I can even on the days I feel like I don’t know what I am doing. I can say without a doubt that many couldn’t do this by themselves. God picked Haven to be mine for a reason.

As always be the good y’all.

xoxo Taylor

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